NICE announces roundtable event to ensure implementation of ME/CFS guideline

Share on facebook
Share on twitter
Share on email

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation.”

We understand the purpose of the roundtable is to move forward by removing the roadblock to implementation and publish the finalised guideline. We will continue to do everything possible to ensure that it is published without delay in its current form in line with NICE’s established procedures.  

The ME community has been badly affected by the unprecedented delay in publishing the new guideline.  This guideline has been worked on for over three years and has used the best available evidence as well as the lived experience of people with ME/CFS. The delay means that the 2007 guideline continues to be referred to by clinicians. In order to ensure that clinicians can implement the best quality of care, we call upon NICE to immediately add a warning to the previous version of the guideline along with an instruction to use the November 2020 draft guideline until the final guideline is published.  
 
The response to our petition calling on NICE to publish the finalised guideline has been overwhelming. Gill Leng, Chief Executive of NICE responded to #MEAction UK’s petition of over 16,500 names saying: ‘NICE has acknowledged that this petition clearly emphasises the strength of feeling on this important issue’.

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on email
Email

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

In Memory of Dr. Ronald G. Tompkins MD, ScD

Mourning the loss of Dr. Ron Tompkins

Today #MEAction joins the community in mourning the loss of Dr. Ronald G. Tompkins, MD, ScD, who passed away this week. Ron Tompkins was a clinician, clinical researcher, and friend and ally to people with ME. He was the Sumner M. Redstone Professor of Surgery at Harvard Medical School, Founding Director of the Center for

Read More »
National Institutes of Health campus buildings from above

NIH Long COVID research lacks clear plan to identify and track ME/CFS

MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research agenda lacks a clear plan for how to accurately identify or consistently track the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases among patients with Long COVID. This is of particular importance because a sizable fraction

Read More »

The Last Two Years Changed the World…

What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world of challenges navigating disability on top of symptoms.  It’s no exaggeration to say that 2020 and 2021 changed the world – and the world of chronic,

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top